Forum Discussion
Do you have lymphoedema?
The ALERT (Australian Lymphoedema Education, Reseach and Treatment) team at Macquarie University are looking for people living with primary or secondary lymphoedema to complete an online survey which...
Hi GorgyS​ - I have added the comfi-wave night time sleeve. I dont know how much it is helping yet, this is all still new and quite distressing for me. I think it's helping but am not tuned in enough to understand and feel the changes in my arm. I'm hoping by throwing everything at it something will help.
It is very emotionally changing. Take care of your self. I found it took me a few years of learning before i even started to understand what it wa s, so then i could start to understand why the therapist was telling me to do certian things. It takes a lot of practise to learn to tune in to your lymhoedmea and figure out what helps and what doesn't. Sometimes a journal can help, just take not when it feel a bit puffier or less, look for patterns. heat , hydration, movement, stress.. all effects us, sometimes it not even obvious what. But it is importnat we learn ways to not let it get bigger and bigger.
Only change one new thing at a time, so you can evaluate its effectivenness.
Do check out BCNA webinar libary , they have three really good webinars on lymphoedema.
https://youtu.be/Xc9arAMx7tA?si=6p5F3M6fI5cDN44e
https://youtu.be/ELP-yle7DAs?si=eX7Q7NqB4HPwM60P
https://youtu.be/GCXsBchfYhs?si=8U2rfOWho-wq5VpF
As well a a bunch on You tube , each of their rural workshops often has a lymphodema talk. There is one with Prof Neil Piller too. He is fab.Karratha https://youtu.be/O5kkQbRZWT0?si=hiTWS6JD9slBvmaK
Murray Bridge, Lee Millard Coff Harbour...
I have had it for 16 years, and now have my little routine of movements i do each day, tai chi, stretches, self massage, my compression ... you get used to it for sure, and learn how to manage flare ups. Meeting other lymphies is also one of the best ways to normalise it and learn tips n tricks. Be curious. Knowledge helps empower you and feel more in control and that takes the scary away.
(We had online zoom lymphie support group last night- every 2 mths. Listed on the Lymphoedema Association Australia webpage. Some face to face groups too.- if you happen to be sutherland shire Sydney NSW then let me know)
https://www.lymphaustralia.org.au/events/support-group-meetings/